Well, here’s what’s going on.
I had another CT Scan on November 2. The results are not good. The Doxil was ineffective. The nodules have all pretty much doubled in size since the last scan, on August 21. The largest one is now 4 cm. I have at least 8 of them, of various sizes.
We spoke with the Physician’s Assistant on November 10. At this point, we’ve gone through all the standard protocol for Phyllodes tumors. She told us there were three directions we could go.
The first was to try another drug, called Dacarbazine. It’s an old drug, which has been useful against a range of cancers in the past, and is generally well tolerated. Along with that, we can enter my name for experimental drugs. There are two kinds of those. One kind has been through the first stages of testing, and they have them there in the hospital to use. The other kind is still in the first stages, and they don’t have any. She knows that none of the ones that have been tested work with my kind of cancer, so I’d be taking the untested ones.
The second direction is to have the tumor itself genetically tested, and see if there is a drug that’s tailored to those genes. There’s not a good chance of that, since my cancer is so rare, and the test is very expensive. She gave us paperwork, and it’s $3500. So she recommends that approach only if insurance will cover it.
The third direction is to do nothing for a while, and let my body heal up from all the chemo. The cancer itself isn’t bothering me at all yet. I have no pain, because there aren’t nerves in the lungs, and so far I don’t seem to be having any trouble breathing at all. My O2 levels, on my little home oximeter, are running in the mid nineties.
We asked about other treatments, such as radiation, or proton treatments. The answer is that the proton treatment is really good for surface tumors. Mine are too deep for that. She showed us the CT Scan, and I couldn’t have put the largest one deeper into my body if I’d tried to. It’s smack in the middle of my lung front to back, a bit closer to the middle of my body than the outside. There are also too many for radiation, and some are still pretty small.
The thing is, the cancer is pretty aggressive, so I want to be aggressive right back at it. From my point of view, option 3 is off the table.
We discussed it briefly, and decided to go with the first option, and look into the second and see if insurance will cover it.
So I had the first infusion of Dacarbazine on November 18, day before yesterday. So far, it’s made me more nauseated than any of the others, but oh well.
I’m sorry that I didn’t write all this up and post it before, but the Doxil did a real number on my hands. For a couple of weeks I basically had to ice them frequently, and couldn’t use them at all. Right now, they look horrible, because all the blisters have been drying and peeling, but they feel pretty much normal again.
So I’m back working, and able to type comfortably once more.
And that’s where we are.
I haven’t given up hope. And I thank you all so very much for all your kind thoughts, prayers, and support. I appreciate it all very deeply.
Love every one of you!
Sending healing energy and good thoughts.
Dear Robin, candle lit, surrounding you with Light, Love, and Energy to use as you will. Support for you and all supporting you. Much Love, Blessed Be. Gwen and Mike
Robin, I am so sorry you are going thru so much. Along with those around you. I am sending every bit of love and light and healing energy I can muster. I hope one of the options gives you positive results. I wish you could just rest for a while. You are so strong. Peace and love.
Robin, sending you love & light.
I’m so sorry to hear of the challenges you are having Robin. I’m sending love and light and healing. May all the love from around the world come to you and help to heal you. You’ve given us so much. May it return to you tenfold xxx
Robin, I’m sending healing prayers for you and emotional help for Mike. Love Martha
I love you. I’m so sorry the nasty bugger is being such a nasty bugger. Hugs.
Sending love and healing energy to you. It’s good to hear that you’re coping as well as you are. Here’s hoping that the next treatment zaps those tumours completely! Bright blessings be yours… love, Deb
Robin, I’m thinking of you, as is Kevin. –Charlie Riley
For the hands — Lavender Lane (Milan MI) has a great creme. Helped me resolve 5-FU hands, so I totally know it’s a good product.
I’m grateful for no pain or significant impairment for you! No one fights alone, and you’ve got a great team fighting beside you. Go gettem!! I hope you enjoy your fall and winter holidays!
As always we wish and are praying the best for you.
Love you and miss you. It has been too long since we have talked. I am much better at in person visits than phone calls. Maybe a video chat as a Covid-19 compromise, if you are up to it?
Do you remember the little girl that Santa, Michael and Mrs. Claus, you surprised coming out of the bedroom at our house? Today is her 32nd birthday. That just makes me feel so old.
Wishing you wellness, Robin. We at Fort Weyr miss you and hope for the best!
Continuing to cross fingers for you. If there’s anything we can do…
Forwarding healing energy with good thoughts your way Robin, with love and light.
If your insurance doesn’t cover it, there’s always GoFundMe!
We have a healing altar near the stream on our property. I will put a rock on it for you. A rock for strength and the stream’s water for healing. I wish you the best.
Robin, I am saddened by what happened with you. I wish nothing but good things, energy, and prayers (which I don’t do often) for you and Mike.
Endeavor to persevere!
You are a rock Robin, and ever in our thoughts.
Robin, I am so sorry to read about what you have been going through. I wish you love, light, and Silk the healing energy I can send your way. Bright blessings always.